The holidays, thankfully, continued without drama. No ER visits. Even the cold failed to ever become full blown. Temperature was slightly elevated a couple times but remained normal. Everything so uneventful that I have not been in touch for a full month now! Or at least until last Friday.
Tuesday, January 21st there were CT scans – of the head regarding the hematoma, and the abdomen for lymph involvement with the Leukemia. Apparently they had shown involvement way back in the beginning – not that we ever heard. They also showed good improvement.
So Wednesday we got word that the hematoma had resolved to the point that no more follow ups were warranted, that only an expert would be able to see any residual signs of it. Then came the bone marrow biopsy – the second one to check on progress.
Friday we went in to see Dr. Cassaday expecting to go into round 5 the next day at +2 dosage level. All had gone well during the past 3 weeks. Dave had walked 22 miles during the chemo and could have done more except for all the interruptions. We were feeling very positive.
Unfortunately, the bone marrow results were not so positive. They had dropped from 1.8 to .4 which was not good enough. Normally they expect to see 0. Nothing detectable by this stage half way through the trial. And then they do another 4 rounds to deal with the stuff they can’t even detect! Talk about fear of “aggressive” T-ALL. So .4 was evidence, they said, of failure to respond to the treatment and Dave’s participation was terminated.
So the next thing to try, he decided, was Nelarabine. A 1 in 3 chance of better results. Trouble is, he is wanting to use it in a somewhat off label way. A way which could raise objections from insurance. Given that Dave’s insurance doesn’t want to deal with SCCA anyway, and the high price tag of Nelarabine, approval is not assured. So we are in limbo while awaiting insurance response.
The termination of his participation in the clinical trial was certainly a crushing blow. Medicare’s approval now has no more influence on Aetna. If we need to find a new oncologist, that means we also need to find new housing. Stress. Just what the doctor ordered to improve healing chances!
I am angry, worried, scared, overwhelmed, and unable to label all the other emotions vying for attention. Dave seems to be unaffected. His confidence that he will continue to do well seems unaffected. His reassurances are encouraging. I only wish his confidence was more contagious. I think if it was just the treatment question, I would be okay. It is the housing and insurance issues on top that are getting to me.
We are looking into alternative therapies. Given that the Nelarabine has a poor track record (at least with T-ALL) plus side effects, it only makes sense to look at all options. Unfortunately this kind of Leukemia is rare enough that there simply isn’t much data out there, so far as we can tell, let alone success stories to attempt to emulate. It is so aggressive that it doesn’t give much opportunity to experiment.
There appear to be two main cancer diets that people hold out for hope. Gerson and Budwig. And boy do they disagree on some of their recommendations! One says NO coconut oil. The other says YES coconut oil. One says NO this or that and the other says the opposite. They do agree on many things – like staying away from processed foods which I consider a no brainer. And yet we have fallen off that horse and have been eating quite a bit of convenience food – like organic frozen veggie burgers. It all leaves the head spinning and no sense of which way to go.
We are already drowning in conflicting advice, I don’t see how more information could possibly make it worse. So, please, if you happen to know of anything that is relevant to ALL (Acute Lymphoblastic Leukemia) – especially the T-cell variety, please share it.
Sunday we went out for a sail on the Pelican, a free Sunday offering of the Center For Wooden Boats. We had walked down there for exercise the previous Sunday and learned about it. This Sunday I was feeling a desperate need for some activity other than sleep, internet, movies, and eating. I suddenly realized what day of the week it was and wanted a ‘water activity fix’. Just the thought of getting out on the water made me choke up. We sailed up (as passengers) to Gas Works Park, and part way back. Rain was coming and so was a tow boat. They got us in before we had a chance to get soaked – only slightly wet. We assumed it was due to the rain, but it turned out that the gaff arm was not holding up the head of the sail and that was why they came out.
We have signed up for rowing classes – indoor equivalent to skulling – as an all around exercise that I think we will both enjoy. First go is no charge. So many of these exercise programs you have to shell out an arm and a leg before being able to find out if it is suitable for yourself.